Patient data sharing of genetic and health information informs genetics discovery and fuels research

Talbird SE, Savatt JM. Patient data sharing of genetic and health information informs genetics discovery and fuels research. Presented at the 2019 Rare Disease Innovation and Partnering Summit; June 14, 2019. Boston, MA.

Hear how advocacy groups, including cureCADASIL and members of the GenomeConnect team from Geisinger, a National Institutes of Health (NIH) Clinical Genome Resource (ClinGen) grantee are working to enable patients to broadly share de-identified genetic and health data.

• Describe genomic data sharing efforts and discuss how patients are a critical stakeholders in data sharing to inform understanding of genetics

• Learn how data sharing can have a meaningful impact on research, particularly in rare diseases where a few patients may make up a large proportion of the disease population

• Discuss the role of data sharing in helping patients remain updated regarding their genetic test results

• Explore nuances of data sharing including technical and ethical considerations and how individual patients or advocacy groups can engage in data sharing

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Talbird SE, Savatt JM. Patient data sharing of genetic and health information informs genetics discovery and fuels research. Presented at the 2019 Rare Disease Innovation and Partnering Summit; June 14, 2019. Boston, MA.